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Click here to receive MS news via e-mailTimothy Vollmer, MD, on treatment failure rates among first- and second-generation MS drugsMarch 01, 2017Timothy Vollmer, MD, of the University of Colorado Anschutz Medical Campus, spoke with MedPage Today at the European Committee for Treatment and Research in Multiple Sclerosis annual meeting in September, where he presented several posters on treatment failure rates for first- and second-generation disease-modifying drugs in MS. Two full posters may be downloaded by clicking here and here.Following is a transcript of his remarks.The issue that led to these reports was a concept that we've been working on for a number of years called "Maximizing Lifelong Brain Health in MS." By that, we mean using these disease-modifying therapies to try to minimize injury in the brain as early in the disease course as we can, as well as helping patients to adopt a healthy lifestyle such as a good, healthy diet to avoid diabetes, hypertension, and other diseases that further increase disability in MS and also to help them adopt an active lifestyle because we know that exercise improves function in multiple sclerosis.

This concept of maximizing lifelong brain health comes out of a growing concept called "neurological reserve." In multiple sclerosis, about 90% of new lesion formation in the brain is actually clinically silent at the time that it occurs. The brain is compensating for this injury, and the injury actually is leading to not only demyelination, but also loss of neurons and accelerated shrinkage of the brain, or loss of brain volume.

The ability of the brain to compensate for that injury, that sub-clinical injury where the patient actually feels like they're functioning normally and they don't notice any loss in function, is neurological reserve.

The capacity to compensate for subclinical injury, however, is limited and there's a growing consensus in the field that the cause of the progressive phase of MS actually may be the point where the brain has used up that neurological reserve and now it doesn't have neurological reserve to buffer for the sub-clinical disease activity. At that point, it's also unmasked by the effects of aging. We begin to have our brain shrink, all of us, at around age 35, and yet we don't notice the effects of aging usually until later in life. So preserving brain volume in early disease for MS patients is not only important for the MS disability. It's also important to minimize the age-related changes that we're all going to suffer as we go forward.

Your rheumatoid arthritis is flaring up? A trainer at your local gym suggests a safe and easy way to treat it: a three-minute session in a freezing tank, called whole body cryotherapy (WBC). He says not only will WBC help you put an end to rheumatoid arthritis pain better than an ice bath or pack, but also promises that a couple sessions will help with depression and weight loss!

Not so fast.

The problem is, this so-called “treatment” hasn't been proven to do any of these things.

And despite claims by many spas and wellness centers to the contrary, the U.S. Food and Drug Administration (FDA) does not have evidence that WBC effectively treats diseases or conditions like Alzheimer's, fibromyalgia, migraines, rheumatoid arthritis, multiple sclerosis, stress, anxiety or chronic pain.

In an analysis of data from the New York State Multiple Sclerosis Consortium (NYSMSC), those two factors were the only significant predictors of disease progression over 5 years in patients who had the disease for many years, according to Bianca Weinstock-Guttman, MD, of the University at Buffalo in New York, and colleagues. The research will be presented at the American Academy of Neurology meeting here in April.

"We have to inquire on patients' perceived symptoms and not rely only on neurologic exam," Weinstock-Guttman told MedPage Today. "The presence of these symptoms should raise increased concerns, and [physicians should] consider more appropriate therapies, such as change to a more efficacious disease-modifying therapy. They should also re-emphasize active exercise, improved diet, the importance of sleep, and a general [attention] to wellness."

Traditional factors shown to be predictive of a higher risk of disease conversion in MS include older age at onset, high frequency of relapses, and male gender. To assess additional factors that may help in predicting disease progression, Weinstock-Guttman and colleagues assessed data from the NYSMSC, which included 155 patients who at baseline had relapsing-remitting disease, were at least 50 years old, and had a disease duration of at least 15 years.

Wednesday, March 1, 2017

MS Views and News is proud to share the initiatives of the MS Foundation:

Join
Us for National MS Education and Awareness Month Activities

March is National MS
Education and Awareness Month, and MS Focus is gearing up to make it the
best one yet. Join us in learning, raising awareness, and building
support for people with MS in communities across the country. How can you
get involved?

Request
an Awareness Kit

Awareness kits contain
educational tools to help you live at your best with MS, as well as raise
awareness in your community during National MS Education and Awareness
Month. Inside each kit, you'll find a toolkit with helpful, interesting
information addressing your needs as a person with MS. Also included is a
booklet appropriate for sharing with family members, healthcare workers,
media, and the community at large to help them become part of the MS
community. Like all MS Focus programs and services, the kits are offered
free of charge.

Each kit also includes
your orange MS awareness wristband, and other fun surprises just for
you!

The Assistive Technology (AT) Program may help locate, partially fund, or provide full funding for one of a wide range of devices. These allow those with MS to function more independently in their daily lives, as well as more easily participate in recreational, educational, and vocational activities. These include:

Aids for daily living

Communication devices

Computer aids

Environmental control systems

Home and vehicle modifications

Orthotics

Seating, positioning, and mobility devices

Aids for vision and hearing

Cooling ai

To apply for this program, click here to be redirected to the MS Foundation website where these applications are accessible.

A key test for identifying multiple sclerosis during diagnosis, or to confirm a relapse, is magnetic resonance imaging (MRI.) For those who’ve never had to undergo an MRI, the thought of having this test might be terrifying. Being encased in a magnetic tube that, when operational, sends out deafening noise and requires complete stillness can be intimidating.

This is especially true for those who need to undergo diagnostics with and without contrast dye, and who also may need images of both the brain and spinal column. Remaining stone still for as long as an hour-and-a-half in a tight space isn’t a skill most people can boast! It doesn’t help that others describe the experience in ways that make it seem impossible to endure.

However, there are ways to survive it. Even a claustrophobic person (me!) has found solutions for managing the discomfort that an MRI portends.

Hear no evil

The extreme drum-like noise of the magnets inside the tube are impossible to ignore.

Click here to receive MS news via e-mailOne
of the most troubling symptoms of multiple sclerosis, especially for those of
us who are still working, is “brain fog” — not being able to concentrate … not
feeling “sharp” when working on a task or solving problems.

So it was interesting to read about a new study that reports that patients with MS had better problem-solving ability and response time after training with a technology called transcranial direct current stimulation, or tDCS.

During tDCS, a patient wears a headset through which a low amplitude direct current is applied to the scalp. The stimulation makes it easier for neurons in the brain to fire. The result, say the researchers, is an improvement in the learning that takes place when patients use cognitive training games during rehabilitation. And, importantly, this technology doesn’t have to be applied in a clinic; it can be used by a patient at home.

Click here to receive MS news via e-mailwritten by The Renown, Wheelchair KamikazeOf late I find myself in uncharted waters, my creeping paralysis taking me to places in mind and body that I could never have imagined I’d visit. It’s simply getting harder and harder to do everything, and as a result my contacts with the world outside of my apartment grow fewer and farther between. As my disabilities progress and my abilities regress, the familiar patterns and rhythms of everyday life fall further and further away, my healthy days now so for behind me that the memories of them often seem false, the stuff of imagination. Strangely enough, even as my old reality seems to vanish into the ether, certain incidents and instances do suddenly pop into mind with crystal clarity, richly detailed and full of life, decades old events recalled as if I’d lived them only yesterday. This juxtaposition of the old and the new, cast in such stark relief, reveals just how obsolete the rules that governed my old life have become in the context of my new reality.

As my existence has shifted more and more from the physical to the mental, certain truths about myself and my fellow inhabitants of this planet have become clear. Almost from birth we are taught the constructs and customs of the societies in which we live. Now more than ever the mass media plays a tremendous role in shaping our ideals and expectations, and in defining the parameters of social interaction. Along with reading, writing, and arithmetic our 12+ years of formal schooling provide us with a variety of behavioral templates for daily life. In combination, these ever-immersive entities imprint within us a library of scripts that cover almost every situation we might encounter, almost every part life might call on us to play.

We are taught that our destinies are largely a function of free will; in reality, though, most people live lives that fit neatly within the confines of predefined boundaries. We each flesh out our roles with our own particular quirks and peculiarities, but rare is the person who shatters the restraints and expectations of social norms. Some of the people that do so with audacity become rich and famous as a result, but many others who can't or won't comply struggle through life on the fringes of society. Woody Allen famously said that 80% of success is just showing up; this is largely true due to the fact that most human beings can fake it till they make it, falling back on sets of learned behaviors until they can grow into the roles they are expected to play.

Music therapy has long been known for its healing powers — its use dates back to WWI, where it was used to help with the physical and emotional healing of the wounded. Music can also be of help to those of us with multiple sclerosis.1

An article from the U.S. Department of Veterans Affairs, titled “Music Therapy in Multiple Sclerosis” and written by Jenny Asparro who is studying music and neuroscience at St. Olaf College, recognizes that there are many benefits with music therapy. Beyond the obvious calming affects, it can also encourage body movements to a rhythmic beat, and can add many rewards to our lives.

Body movements that we use during the day are essential to keeping us active and independent. Adding repeated movements together with a melodic sound can improve coordination and concentration. Doing these repetitive actions can also affect endurance, and help create a more level walking gait.

Click here to receive MS news via e-mailAs we have reported in previous issues of the newsletter, ACP accelerates MS research by
distributing samples and data from the Repository that many of you helped to create, to
scientists studying MS. At the heart of ACP’s mission is providing resources that enable
scientists to do important work that positively impacts the lives of people affected by MS.
What sets us apart from other MS organizations is that we partner with hundreds of scientists,
in a wide array of institutions, literally all over the globe. We think it’s impossible to predict
where the next great discovery in MS treatment will be found. Accordingly, our resources are
“open source,” meaning that we’re willing and able to invest in every MS researcher, wherever
they may be. This is the story of one investigation,
conducted by a team of nine scientists
from four Australian universities and a
French biotechnology company, led by Continue reading

MS Views and News is MAKING an IMPACT on those affected by Multiple Sclerosis

Sunday, February 26, 2017

Dr. Annie Brewster, who has MS, struggled over the decision to reject her own doctor’s advice.

By Dr. Annie BrewsterGuest Contributor

Like most doctors, I am an overachiever and I have always been a “good” student. Throughout my education, I perfected the art of making my teachers happy. I made it through prep school, college at Stanford University and Harvard Medical School with high honors. I am used to doing what’s expected of me, and doing it well. I thrive on the rewards associated with such behavior.

But now, as a patient with Multiple Sclerosis, I find myself in an unfamiliar role. I am deliberately choosing to ignore my doctors advice. He wants me to be on medication, but I quit a month ago. While I trust that I am doing the right thing, I can’t help but feel that I am a “bad” patient, a disappointment. Undoubtedly, part of this is due to my neurotic, overachiever tendencies. My doctor has not reprimanded me. He has simply made his opinion clear, as he should. Still, I sense a subtle disapproval and I feel misunderstood and boxed in, like he doesn’t really see the whole me.

Because I sit on both sides — as doctor and patient — I am especially interested in exploring these feelings. Why do I feel like a disappointment? Is there such a thing as a “bad” patient? When should we listen to our doctors, and when should we not? As patients, are we free to disagree?

As a physician, I would like to say that doctors do not classify patients as “good” or “bad”, but I can’t. Consciously and unconsciously, and of course in varying degrees, we do. To be honest, my job is easiest when a patient accepts the diagnosis I provide, understands my explanation of the disease process and the pros and cons of various treatment options and ultimately follows my recommendations. It is particularly satisfying when patients do what I say, get better and then express gratitude. A neat and tidy package, wrapped up and sealed. A sense of mastery.

SYMPTOMS of MS

In multiple sclerosis , damage to the myelin in the central nervous system (CNS), and to the nerve fibers themselves, interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. This disruption of nerve signals produces the primary symptoms of MS, which vary depending on where the damage has occurred.

Over the course of the disease, some symptoms will come and go, while others may be more lasting.

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A web-blog (formerly known as Stu's Views and MS News), now published by MS Views and News, a patient advocacy organization. The information on this blog helps to Empower those affected by Multiple Sclerosis globally, with education, information, news and community resources.

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